The Pennsylvania Waiting List Campaign – What You Need to Know

The Pennsylvania Waiting List Campaign, you may have heard the term, but you may be wondering what exactly it is and why it matters.

The sad truth is, people with disabilities, their families, and the people who work to support community-​based human services are facing anxiety and uncertainty about huge systemic issues that have plagued the state’s seemingly outsized waiting list for people with intellectual disabilities.

Pennsylvania’s Medical Assistance (“Medicaid”) program includes home and community-based services waivers (“HCBS Waivers”) that fund a variety of services enabling eligible individuals with intellectual disabilities (ID) and/or autism to live in their own homes and communities.

For in-depth information, take a look at this Fact Sheet for an overview of Medicaid HCBS Waivers generally and the HCBS Waivers in Pennsylvania that offer services to people with ID and/or autism.

To date, there are over 13,000 people in Pennsylvania with intellectual disabilities on a waiting list to receive services from the state. These people are waiting for a “Medical Assistance home and community-based waiver.”

The waiver is essentially a part of the state’s Medicaid program, which uses a combination of state and federal dollars, which pay for care in people’s homes or a small group setting, instead of having people isolated in large institutions that were previously called home for people will intellectual disabilities.

The waiting list is currently broken down into three separate lists. The planning list, for those who will need services in several years; the critical list, for those who will need services in more than six months but less than two years; and the emergency list for people who will need services within six months — or in some cases, immediately.

Funding from the waiting list could help people with intellectual disabilities have an aide, spend more time in the community, and ideally, allow them to have some type of vocational training, or one day, employment. Advocates for those with disabilities have implored the state to offer more services to people in their own homes or small group homes. Nationwide, there are 15 states that no longer house individuals with disabilities in large institutional settings.

The Pennsylvania Waiting List Campaign’s goal is to end the devastation of Waiting Lists for persons with intellectual disability (ID) and autism who need services through the Pennsylvania Office of Developmental Programs (ODP). These people are entitled to institutional care but choose to wait for home and community-based services through the ODP Waiver Programs.

Services most requested by people living with families are individual supports like Habilitation, Transportation, Employment, and Respite.

In preparing Pennsylvania’s 2019-20 fiscal year budget, Gov. Tom Wolf and the General Assembly will have an opportunity to confront these huge systemic issues that have been causing families years of anxiety and uncertainty.

Difficult issues include the state’s seemingly outsized waiting list for people with intellectual disabilities. Current data provided by the PA Waiting List Campaign reports that over 13,000 people are on a waiting list for services, with more than 5,200 persons in an emergency needs category.

What are Waivers?

From the time they are born, Pennsylvanians with intellectual disabilities have access to a variety of special education programs.

What is it? The Medicaid Home and Community-Based (HCBS) waiver program was created more than 25 years ago to allow individuals with intellectual disabilities to receive services in their homes and communities rather than in an institution.

Why “waiver”? The term comes from an agreement between the state and federal governments to “waive” certain regulations under the medical assistance program. Waivers are allocated in slots rather than dollar amounts, based on the needs of the individual.

Who allots them? The state Department of Human Services, Office of Developmental Programs (ODP), allocates waiver slots, which are funded primarily by Medicaid, to each of the state’s 67 counties, based on need. The counties give them to individuals who are over age 3, require active treatment, and are eligible for medical assistance.

To work around the law, the federal government allows the state to “waive” Medicaid rules for institutional care so that people can get money toward services or living expenses in their communities instead. To get the money, you have to be approved for a waiver – and there are only so many given out each year.

Consolidated Waiver: Known as the “big” waiver, it has no cap and can be used for any supports and services – help with personal care, chores, meal planning, errands, shopping, healthcare needs – that allow recipients to live on their own, in a group home or a family home.

The Pennsylvania Waiting List:

Individuals applying for waivers work with a county caseworker to complete a form that determines which waiting-list category they fit into. The categories indicate how urgent the current need for services is:

Planning: Two to five years.

Critical: Six months to two years.

Emergency: Now or within the next six months.

Waiver slots become available when the state expands the waiver program and/or someone who holds a waiver dies, moves out of state, or for whatever reason, no longer wants the slot.

How can I make a difference?

One of the biggest challenges is simply raising money for the program. It may come with a big price tag, but the government should ensure individuals get the care they need to be independent. Family members and caregivers writing letters and making phone calls on behalf of an individual with intellectual disabilities are encouraged. They should also reach out to their state representatives and advocate for the state to put more money toward the waiver program.

Letter writing tips:

  • Keep it brief
  • Personalize it, by telling your story
  • Include a photo
  • Enlist their help
  • Be direct but cordial
  • Offer to meet with them
  • Offer your assistance
  • Say “THANK YOU”

Click here for a sample letter that you can personalize and send.

More Resources:

People have benefited and continue to benefit from the advocacy and assistance of those in past generations who have worked to achieve systems changes in the I/DD system. Today, new leaders must emerge to assure that supports and services will be available in the future, that they are of the highest quality and that they continue to improve. We urge you to stand up to lend your support and talents by becoming active in your county advocacy organizations.

Send in your stories to the PA Waiting List Campaign. Your stories are what move legislators to take action!

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